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BACKGROUND: Services for patients with kidney disease underwent radical adaptations in response to the COVID-19 pandemic. We undertook an online national survey of UK kidney centres to understand the nature, range, and degree of variation in these changes and to explore factors contributing to differing practice. METHODS: The survey was designed by a multidisciplinary team of kidney professionals, service users and researchers. It enquired about centre services and staffing, including psychosocial provision, and changes to these in response to the COVID-19 pandemic. Links to the survey were sent to all 68 UK kidney centres and remained active from December 2021 to April 2022, and a revised version to nurses in late 2022 for additional data. Quantitative data were analysed descriptively. Content analysis on free-text responses identified common themes. RESULTS: Analysable responses were received from 41 out of the 68 UK centres (60%), with partial data from an additional 7 (11%). Adaptations were system-wide and affected all aspects of service provision. Some changes were almost universal such as virtual consultations for outpatient appointments, with significant variation in others. Outpatient activity varied from fully maintained to suspended. Many centres reduced peritoneal dialysis access provision but in some this was increased. Centres considered that changes to transplant surgical services and for patients with advanced CKD approaching end-stage kidney disease had the greatest impact on patients. Few centres implemented adjustments aimed at vulnerable and underrepresented groups, including the frail elderly, people with language and communication needs, and those with mental health needs. Communication issues were attributed to rapid evolution of the pandemic, changing planning guidance and lack of resources. Staffing shortages, involving all staff groups particularly nurses, mainly due to COVID-19 infection and redeployment, were compounded by deficiencies in staffing establishments and high vacancy levels. Centres cited three main lessons influencing future service delivery, the need for service redesign, improvements in communication, and better support for staff. CONCLUSION: Kidney centre responses to the pandemic involved adaptations across the whole service. Though some changes were almost universal, there was wide variation in other areas. Exploring the role of centre characteristics may help planning for potential future severe service disruptions.
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COVID-19 , Insuficiência Renal Crônica , Humanos , Idoso , COVID-19/epidemiologia , Pandemias , Diálise Renal , Insuficiência Renal Crônica/epidemiologia , Insuficiência Renal Crônica/terapia , Rim , Reino Unido/epidemiologiaRESUMO
OBJECTIVE: PsA is associated with significant distress and can be life-ruining. Reducing distress can improve quality of life and disease outcomes. Quality of life measures broadly identify the extent to which PsA impacts on people's lives but do not enable clinicians to address PsA-specific distress in the setting of the clinic. The aim of this study was to explore people's illness beliefs, emotions and behaviours that relate to living with PsA and account for the distress experienced by those living with this condition. METHODS: Semi-structured individual interviews were conducted in the UK with adults with PsA. Interview questions were theoretically informed by the Common-Sense Self-Regulation Model (CS-SRM). Two stages of data analysis, in line with thematic and framework analysis principles, involved coding pre-determined CS-SRM components and identifying any additional emergent themes. Constant comparison techniques allowed for patterns across CS-SRM components to emerge inductively from the data. RESULTS: Twenty-four people with PsA participated (54% male; aged 27-71; time since onset ranged between 4 months and 29 years). Four core themes comprising clusters of illness beliefs, emotions and related behaviours emerged accounting for patient distress: restrictions, role of others, resentment and resignation. Suicidal ideation in the sample was commonly expressed and patients feared exponential degeneration of their condition. Patients reported the condition being dismissed or belittled by others and therefore hiding their distress from people around them. CONCLUSION: People with PsA experience significant disease-related distress, including suicidal ideation. Misperceptions, ineffective coping styles (e.g. avoidance/blocking) and negative emotions should be actively identified and addressed with people with PsA.
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BACKGROUND: Unhealthy lifestyle is common in psoriasis, contributing to worsening disease and increased cardiovascular disease (CVD) risk. CVD risk communication should improve patients' understanding of risk and risk-reducing behaviours; however, the effectiveness of risk screening is debated and evaluation currently limited. OBJECTIVE: To examine the process of assessing for and communicating about CVD risk in the context of psoriasis. DESIGN: Mixed-methods study in English general practices to (i) determine proportions of CVD risk factors among patients with psoriasis at risk assessment and (ii) examine patient and practitioner experiences of risk communication to identify salient 'process' issues. Audio recordings of consultations informed in-depth interviews with patients and practitioners using tape-assisted recall, analysed with framework analysis. PARTICIPANTS: Patients with psoriasis (n = 287) undergoing CVD risk assessment; 29 patients and 12 practitioners interviewed. RESULTS: A high proportion of patients had risk factor levels apparent at risk assessment above NICE recommendations: very high waist circumference (52%), obesity (35%), raised blood pressure (29%), smoking (18%) and excess alcohol consumption (18%). There was little evidence of personalized discussion about CVD risk and behaviour change support in consultations. Professionals reported a lack of training in behaviour change, while patients wanted to discuss CVD risk/risk reduction and believed practitioners to be influential in supporting lifestyle management. CONCLUSIONS: Despite high levels of risk factors identified, opportunities may be missed in consultations to support patients with psoriasis to understand CVD risk/risk reduction. Practitioners need training in behaviour change techniques to capitalize on 'teachable moments' and increase the effectiveness of risk screening.
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Doenças Cardiovasculares/prevenção & controle , Atenção Primária à Saúde , Psoríase/complicações , Adulto , Inglaterra , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa , Medição de Risco , Fatores de RiscoRESUMO
BACKGROUND: Psoriasis can be associated with unhealthy lifestyle behaviours such as smoking, excess alcohol use and insufficient physical activity, consequently increasing cardiovascular disease (CVD) risk. Health care practitioners are expected to discuss lifestyle risk factors with patients with a view to reducing health-related risk for patients. However, little is known about the techniques used to communicate information about risk to patients with psoriasis. PURPOSE: We aimed to examine how primary care practitioners communicate risk information when conducting CVD risk assessments. METHOD: Consultations (n = 44) between primary care practitioners (general practitioners and practice nurses) and patients with psoriasis across 10 practices were audio-recorded and analysed using content analysis. A coding frame was used to record specific techniques used by practitioners to communicate risk information. RESULTS: Most frequently used communication methods were verbal descriptors of risk factors accompanied by numerical data (n = 28) rather than verbal descriptors alone (n = 16). Practitioners did not use numerical risk communication methods alone. Where CVD risk factors were discussed with patients (n = 156 occasions across all consultations), interpretations of this information was provided to patients on 131 (84 %) occasions. However, specific advice about behaviour/risk modification was only given on 60 (38.5 %) out of a possible 156 occasions. CONCLUSIONS: Specific advice about how to change lifestyle behaviour to modify CVD risk factors was not always given by the practitioner, particularly when discussing behavioural risk factors. Developing a best practice for communicating complex health risk information would ensure that people with psoriasis are empowered to make lifestyle modifications to reduce CVD risk.
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Doenças Cardiovasculares/prevenção & controle , Estilo de Vida , Psoríase/etiologia , Comportamento de Redução do Risco , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Fumar/efeitos adversos , Adulto JovemRESUMO
BACKGROUND: Depression is prevalent across the spectrum of Chronic Kidney Disease and associated with poorer outcomes. There is limited evidence regarding the most effective interventions and care pathways for depression in Chronic Kidney Disease. OBJECTIVES: To investigate how depression is identified and managed in adults with Chronic Kidney Disease. DESIGN: Scoping review. METHODS: Systematic search of eight databases with pre-defined inclusion criteria. Data relevant to the identification and/or management of depression in adults with Chronic Kidney Disease were extracted. RESULTS: Of 2147 articles identified, 860 were included. Depression was most identified using self-report screening tools (n = 716 studies, 85.3%), with versions of the Beck Depression Inventory (n = 283, 33.7%) being the most common. A total of 123 studies included data on the management of depression, with nonpharmacological interventions being more frequently studied (n = 55, 45%). Cognitive Behavioural Therapy (n = 15) was the most common nonpharmacological intervention, which was found to have a significant effect on depressive symptoms compared to controls (n = 10). However, how such approaches could be implemented as part of routine care was not clear. There was limited evidence for antidepressants use in people with Chronic Kidney Disease albeit in a limited number of studies. CONCLUSIONS: Depression is commonly identified using validated screening tools albeit differences exist in reporting practices. Evidence regarding the management of depression is mixed and requires better-quality trials of both pharmacological and nonpharmacological approaches. Understanding which clinical care pathways are used and their evidence, may help facilitate the development of kidney care specific guidelines for the identification and management of depression.
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Terapia Cognitivo-Comportamental , Insuficiência Renal Crônica , Adulto , Humanos , Depressão/diagnóstico , Depressão/terapia , Insuficiência Renal Crônica/complicações , Insuficiência Renal Crônica/terapia , Antidepressivos/uso terapêutico , RimRESUMO
BACKGROUND: Depression is common in people with chronic kidney disease, yet little is known about how depression is identified and managed as part of routine kidney care. OBJECTIVES: The primary objective was to survey all UK adult kidney centres to understand how depression is identified and managed. A secondary objective was to broadly describe the variability in psychosocial care. DESIGN: Online survey. METHODS: The survey comprised of three sections: (1) general kidney care, (2) psychological provision and (3) social work provision. RESULTS: 48/68 (71%) of centres responded to the general survey with 20 and 13 responses from psychological and social work module respectively. Only 31.4% reported having both in centre psychological and social work practitioners. Three centres reported no access to psychosocial provision. Of the 25 centres who reported on pathways, 36.0% reported having internal pathways for the identification and management of depression. Within services with psychological provision, screening for depression varied across modality/group (e.g., 7.1% in mild/moderate chronic kidney disease vs. 62.5% in kidney donors). Cognitive Behavioural Therapy and Acceptance and Commitment Therapy were the most common interventions offered. Most psychosocial services were aware of the National Institute for Health and Care Excellence guidelines for managing depression in long-term conditions (n = 18, 94.7%) yet few fully utilised (n = 6, 33.3%). Limited workforce capacity was evident. CONCLUSIONS: There is considerable variability in approaches taken to identify and treat depression across UK kidney services, with few services having specific pathways designed to detect and manage depression. Workforce capacity remains a significant issue.
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Depressão , Humanos , Reino Unido , Depressão/psicologia , Depressão/terapia , Inquéritos e Questionários , Insuficiência Renal Crônica/psicologia , Insuficiência Renal Crônica/terapia , Insuficiência Renal Crônica/complicações , Masculino , Feminino , AdultoRESUMO
INTRODUCTION: Nonadherence to inhaled corticosteroids (ICSs) in children with asthma leads to significant morbidity and mortality. Few adherence interventions have been effective and little is known about what contributes to intervention effectiveness. This systematic review summarizes the efficacy and the characteristics of effective interventions. METHODS: Six databases were systematically searched on October 3, 2020 for randomized control trials measuring adherence to ICS in children with asthma. A narrative synthesis was conducted focusing on intervention efficacy and study reliability. Intervention content was coded based on the National Institute for Health and Care Excellence guidelines for medicines adherence (the Perceptions and Practicalities Approach, PAPA) and behavior change techniques (BCTs), to determine the effective aspects of the intervention. RESULTS: Of 240 studies identified, 25 were eligible for inclusion. Thirteen of the 25 studies were categorized as being highly reliable. Nine of the 13 interventions were effective at increasing adherence and 6 of those met the criteria for a PAPA intervention. Techniques targeting perceptions and practicalities in successful interventions included rewards, reminders, feedback and monitoring of adherence, pharmacological support, instruction on how to take their ICS/adhere, and information about triggers for symptoms and nonadherence. CONCLUSION: Adherence interventions in children with asthma have mixed effectiveness. Effective intervention studies were more frequently of higher quality, were tailored to individuals' perceptual and practical adherence barriers, and used multiple BCTs. However, due to the small number of included studies and varying study design quality, conclusions drawn here are preliminary. Future research is needed to test a PAPA-based intervention with a rigorous study design.
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Asma , Corticosteroides/uso terapêutico , Asma/tratamento farmacológico , Criança , Humanos , Reprodutibilidade dos TestesRESUMO
INTRODUCTION: Financial incentives are utilised in healthcare systems in a number of countries to improve quality of care delivered to patients by rewarding practices or practitioners for achieving set targets. OBJECTIVES: To systematically review the evidence investigating the impact of financial incentives for implementation of supported self-management on quality of care including: organisational process outcomes, individual behavioural outcomes, and health outcomes for individuals with asthma or diabetes; both conditions with an extensive evidence base for self-management. METHODS: We followed Cochrane methodology, using a PICOS search strategy to search eight databases in November 2015 (updated May 2017) including a broad range of implementation methodologies. Studies were weighted by robustness of methodology, number of participants and the quality score. We used narrative synthesis due to heterogeneity of studies. RESULTS: We identified 2,541 articles; 12 met our inclusion criteria. The articles were from the US (n = 7), UK (n = 4) and Canada (n = 1). Measured outcomes were HbA1c tests undertaken and/or the level achieved (n = 10), written action plans for asthma (n = 1) and hospital/emergency department visits (n = 1). Three of the studies were part of a larger incentive scheme including many conditions; one focused on asthma; eight focussed on diabetes. In asthma, the proportion receiving 'perfect care' (including providing a written action plan) increased from 4% to 88% in one study, and there were fewer hospitalisations/emergency department visits in another study. Across the diabetes studies, quality-of-care/GP performance scores improved in three, were unchanged in six and deteriorated in one. CONCLUSIONS: Results for the impact of financial incentives for the implementation of self-management were mixed. The evidence in diabetes suggests no consistent impact on diabetic control. There was evidence from a single study of improved process and health outcomes in asthma. Further research is needed to confirm these findings and understand the process by which financial incentives may impact (or not) on care. TRIAL REGISTRATION: Protocol registration number: CRD42016027411.
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Asma/terapia , Diabetes Mellitus/terapia , Motivação , Autocuidado , Canadá , Humanos , Reino Unido , Estados UnidosRESUMO
OBJECTIVES: Individuals' illness representations, including beliefs about psoriasis (a complex immune-mediated condition), and their emotional responses to the condition guide self-management behaviour. It is also plausible that health care providers' illness representations guide their own management of psoriasis. Patients commonly report poor health care experiences related to psoriasis, and the role of health care providers' beliefs, emotions, as well as their knowledge, experiences and behaviours ('personal models') in this is unexplored. This study aimed explore health care providers' personal models of psoriasis. DESIGN AND METHODS: Qualitative analysis of 23 semi-structured interviews with health care professionals providing care for psoriasis patients was performed. Purposive sampling achieved maximum variation regarding participant discipline, level of experience, gender and age. The self-regulatory/common sense model informed data collection and initial data analysis. Principles of framework analysis were used to generate predetermined and emergent key issues related to practitioners' personal models. RESULTS: Three types of personal model emerged. Sophisticated-Linear Model: 70% of practitioners recognized psoriasis as a complex condition but managed it as a skin condition. Mixed Model: 17% of practitioners recognized/managed some elements of psoriasis as complex and some as a skin condition. Sophisticated-Sophisticated Model: 13% recognized and managed psoriasis as a complex condition. Across the data set, five themes emerged illustrating key patterns underpinning these different models including (1) Recognising complexity, (2) Putting skin first, (3) Taking on the complexities of psoriasis with the patient, (4) Aiming for clearance, and (5) Affective experiences within psoriasis consultations. CONCLUSIONS: Health care providers recognized psoriasis as a complex condition but commonly reported managing psoriasis as a simple skin condition. Providers' beliefs and management approaches varied in the extent to which they were consistent with one another; and their emotional experiences during consultations may vary depending upon their personal model. Findings could inform future dermatology training programmes by highlighting the role of health care providers' illness representations in clinical management of the condition. STATEMENT OF CONTRIBUTION: What is already known on this subject? Health behaviour is predicted by underlying beliefs and emotions associated with an illness and its treatment. Few studies have examined health care providers' beliefs and emotions about the illnesses they manage in clinical practice. Many patients are dissatisfied with dermatology consultations and wish to be treated holistically. What does this study add? Qualitative exploration of health care providers' beliefs/emotions revealed their personal models of psoriasis. Providers' personal models of psoriasis vary in coherence and are often skin rather than whole person focused. Further investigation of health care providers' models of psoriasis and their impact on health outcomes is needed.